Community Census

About You

Please provide your contact information. This is the person completing the form.

First Name *

Please enter your first name.

Last Name *

Please enter your last name.

Email Address *

Please enter a valid email address.

Phone Number *

Please enter your phone number.

Your Relationship to the MED13L Patient *

Please select your relationship.

Would you like to include your spouse? *

Yes No

Spouse Information

Spouse’s First Name

Spouse’s Last Name

Spouse’s Email

Spouse’s Phone

Spouse’s Relationship to MED13L Patient

Your Consent *

Location

Your address helps us understand the geographic reach of the MED13L community.

Street Address *

Please enter your street address.

Address Line 2

City *

Please enter your city.

State / Province / Region

ZIP / Postal Code

Country *

Please select your country.

MED13L Patient Information

Please provide information about the individual with MED13L Syndrome.

Patient’s First Name *

Please enter the patient’s first name.

Patient’s Last Name *

Please enter the patient’s last name.

Date of Birth *

Please enter a valid date (MM/DD/YYYY).

Diagnosis Date *

Please enter a valid diagnosis date (MM/DD/YYYY).

Gender at Birth *

Male Female

Please select a gender.

Number of Siblings *

Please select number of siblings.

Does the patient have a geneticist? *

Yes No

Geneticist Information

Title

First Name

Last Name

Organization / Affiliation

Research & Registry

Help us connect your family’s data to the broader MED13L research community.

What is a Research CRID?

A CRID (Common Research ID) is a free, de-identified tracking number that allows your data to be linked across research studies without ever revealing your identity. It keeps your personal details fully private while making your contribution to research more impactful. Create your free CRID at thecrid.org →

Research CRID Number

Optional, but encouraged. No CRID yet? Create one free at thecrid.org.

What is RARE-X?

RARE-X hosts the MED13L Data Collection Program, a free and secure registry where families share health information so researchers can study MED13L across the whole community. It is a program of Global Genes, and the Foundation takes part so your data helps move research toward treatments. You decide who can access your information, and you can update or remove it at any time. Join the MED13L program at rare-x.org →

Are you already registered with RARE-X? *

Yes No Not sure

Please select an option.

Are you interested in volunteering with The MED13L Foundation? *

Yes No Not sure

Please select an option.

Consent & File Submission

Please review the authorization below. Uploading a genetic report is optional. You can complete registration without one.

Authorization and Consent *

Newsletter (Optional)

Upload Genetic Report (Optional)

PDF format only, max 10 MB. If you have multiple files, combine them into one PDF first.

📄

Drag & drop your PDF here

You can submit this form without a genetic report and upload one later.

Something went wrong while submitting. Please try again or contact us at info@med13l.org.

Thank You for Registering!

Your information has been securely submitted to the MED13L Foundation. We will be in touch if we have any questions. To reach us directly, email info@med13l.org.

Patient Registry & Genetic Report Submission

Thank You for Registering!

Our Foundation

About MED13L

Advocacy

Contact Us

Research & Family Meetup

Community Census

Patient Registry & Genetic Report Submission

Thank You for Registering!

Our Foundation

About MED13L

Advocacy

Contact Us

Site Search

Research & Family Meetup